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Trails – Enabling Ongoingness

Trails – Enabling Ongoingness

A design artefact that explores concepts of ongoingness in the context of dementia. The piece explores the relationship between a granddaughter and her grandparents through capturing and curating digital media now for the future, offering ways for her to feel a sense of her grandparents in particular places.  

Project lead: Helen Fisher

Funded by: Research England

Partners: Northumbria University (Lead) / Newcastle University / BBC / Marie Curie / CRUSE Bereavement / National Council for Palliative Care

Trails is a tiny audio artefact that invites the listener to discover stories captured and curated by loved ones with dementia when visiting places that are meaningful for the person and their family. The artefact is one design response generated as part of the EPSRC project, Enabling Ongoingness which explores the role of design in creating meaningful connections with people who have passed away or who are at end of life.

For more information please visit the Enabling Ongoingness Website.

The Memory Box – Children’s Book

Dementia can impact on all family members, particularly children or grandchildren. However there is a dearth of material to help children understand what is happening… 

Funded by: Research England

Project lead: Claire Craig, Helen Fisher

The Memory Box is one of a series of books aimed at children to build understanding of what dementia is and how to best support a relative living with the condition. The research examines whether this medium can help children to navigate the complex challenges that having a parent or grandparent with dementia can bring.

Making Sense Together

A space where people with dementia, family members and supporters can come together and explore ways of living well with dementia.  

Project lead: Claire Craig, Helen Fisher

Funded by: Research England

Partners: Scottish Dementia Working Group / Alzheimer Scotland / DEEP Network

Traditionally patient information for people living with dementia is written separately from that aimed at their family members and carers. This research enquiry challenges this genre and through a participatory design research process has developed a resource to enable people with dementia and their family members to make sense of the condition and develop supportive strategies together.

This resource has transformed how we relate to each other. We have completely re-designed our routine, the environment and this has made all the difference in adapting to and managing the challenge that dementia brings.

Support of Person with Dementia

Photography in care homes

Project team: Claire Craig

Funded by: Royal College of Occupational Therapists, Higher Education Academy

Globally the population is ageing and the fastest growing demographic are individuals who are aged eighty-five and over (WHO, 2011). Whilst these individuals represent a significant proportion of the older people who currently live in care homes the voices of frail older people are missing from much of the care home literature. In part this is because their complex needs make it difficult for researchers using traditional qualitative methods to elicit their experiences.  

This enquiry sought to redress this balance by exploring the potential of photography as a method in care home research. This is important because if designers are to create environments that support the physical and emotional needs of individuals it is important to understand the life world of older people living in these environments.

This study was undertaken across three care home sites in the North of England. Strand one of the research utilised ethnography to build understanding of the broader cultural and organizational factors associated with photography in the care homes studied. In strand two older people were invited to take photographs of their day-to-day experiences of living in the home. The themes were analysed using an interpretative phenomenological method. The themes identified through this analysis were then embodied in a series of photographs and these formed the basis of a further interview with participants.  

The method was found to have a number of strengths: older people expressed their enjoyment of taking photographs and of sharing and talking about these, the concrete nature of the photographs helped to prompt memory recall and offered a tangible reminder of themes or issues participants wished to discuss. Through this method older people participating in the study described the multiple transitions they faced and the challenges of simultaneously navigating this new environment whilst also making sense of the ‘alien’ body they now inhabited. The life world of the older person was conceptualized as betwixt and between place and space, being in time and out of time, between hope and despair.  

A number of key findings relating to how the design of these environments contributes to quality of life were made. This work has informed a national resource for older people living in care homes. 

Me & You

This enquiry explores the role of design in supporting meaningful conversations for older people living in care homes. 

Project team: Claire Craig, Helen Fisher

Funded by: Research England

Partners: Sheffcare

The Department of Health defines a care home as an establishment that, ‘provides accommodation, together with nursing or personal care for [individuals who] are or have been ill, persons who have or who have had a mental disorder, persons who are disabled or infirm’ (Department of Health, 2000, p.3).
 
Older people living in care homes have some of the most complex needs of society (Office of Fair Trading, 2005). Levels of dependency are high. In one national survey undertaken by BUPA and the Centre for the Policy of Ageing (Lievesley, Crosby and Bowman, 2011) 90% of care home residents were identified as having high support needs.

This enquiry explored the role of design in supporting meaningful conversations for older people living in care homes. The outbreak of COVID-19 meant that care homes became closed communities. As a consequence, residents who were frail or facing end of life were unable to tell family members how they felt and to say goodbye. This enforced separation also made it difficult for family members.  

An earlier enquiry, funded by Marie Curie, identified topics that individuals at end of life identified as being meaningful and questions people wished they had asked their relative whilst they were still alive. These topics and questions were translated into the research-informed product: You & Me.  

Current research is evaluating the potential of Me &You to support relationships between older people living in care homes and their family members, offering individuals the opportunity to express what is important. 

This little resource prompts you to record all the things you want to say to your loved one but somehow just never have time to put into words. 

Me & You Participant

Place and Space

The move into a care home has been conceptualised as one of the most difficult transitions in later life. At times this transition can be unplanned, occurring as a consequence of a life-event or crisis and individuals may as a result find themselves suddenly placed in an alien environment in an unfamiliar parts of a city. This can lead to feelings of disconnection and dis-orientation. 

Project team: Claire Craig, Helen Fisher

Funded by: Art and Design Research Centre, Sheffield Hallam University

Partners: Sheffcare

The research enquiry ‘photography in care homes’ (Craig 2014) highlighted the importance of finding ways to support residents to gain a sense of place and space and thereby experience a sense of belonging. This was found to be fundamental to wellbeing. 

The present enquiry responded to the findings of this study and was undertaken in care homes in the North of England. Lab4Living design researcher Helen Fisher worked with residents and staff to develop a series of 3-dimensional interactive maps. Through an iterative ‘research through design’ process, a range of tools for orientation and meaning-making were created. These are currently being trialed across a number of care homes.  

Findings to date suggest that the maps act as mechanisms though which individuals are able to communicate important facets of their life and through this process staff in the homes are able to build significant relationships.  

The resources continue to create a focus for meaningful conversations and a way to discover who people are. 

Activity Co-ordinator

Connecting People, Connecting Support Online

Connecting People, Connecting Support is an online space where people with dementia, family members and care staff can access post-diagnostic materials informed by our research programme Journeying through Dementia.  

Project team: Claire Craig, Helen Fisher

Funded by: Research England

Partners: Alzheimer Scotland, Royal College of Occupational Therapists,
Scottish Dementia Working Group

The web-platform was created in response to the COVID-19 pandemic in 2020, which saw many individuals confined to home and unable to access vital services. The web-site was highly successful in providing a platform through which individuals and their families could access the Journeying through Dementia research and it was found to be a positive way to engage with a wide-number of individuals. Within two months of its launch the materials had been down loaded over 30,000 times, formed the basis of interventions used by the Alzheimer Scotland link workers. The research team was invited to offer a webinar to over 150 Allied Health Professionals about the work (see link) and it was cited in the Guardian as an example of best practice in relation to University responses to the COVID-19 pandemic. 

Our clinical support worker has been using the website to focus welfare phone calls for people living alone at home with dementia. They’ve gained quite a rapport from using the topics as themes for their conversations – great work! 

Allied Health Professional

The Scottish Dementia Working Group undertook an evaluation of the materials and feedback was overwhelmingly positive.  
 
The work had formed the starting point of a broader enquiry, which seeks to build understanding of the design qualities and features that can help people with dementia to meaningfully engage with this technology. The next phase of the work will be to test a series of principles and practices that have been developed in the delivery of a group-work intervention on-line. 

I am amazed at what you have achieved in such a small amount of time. 

Allied Health Professional

Carers don’t have the energy to search for things online so having this all in one place is great… People feel like they’ve won the lottery when they see the website!

Allied Health Professional

Click here for Connecting People Connecting Support Online related news items.

Coffee Table Conversations

This research explored the role of design in re-imagining patient information. During a previous enquiry, Journeying through Dementia, individuals living with the condition described how existing hospital information and leaflets reinforced a reductionist and medicalized view of the self. The research identified a need to create materials that were more personalized and could challenge the stereotypical images commonly associated with living with a diagnosis. 

Project team: Claire Craig, Helen Fisher

Funded by: National Education Scotland

Partners: Alzheimer Scotland

The team employed a participatory research approach, working with people with dementia and health care staff in Northern England and Scotland. The themes of the cards were determined through the research process and reflect the topics identified as being important. Decisions in relation to the images were made in partnership with people living with dementia.  

The resultant materials provide key information that can be shared with families but the design and style of these mean that they can sit comfortably on the coffee table, blending seamlessly with the home environment.  

These have found to be effective as a focus for conversation and as a mechanism to support engagement in meaningful activity. 

It makes such a difference having something blether about. The cards are beautiful. They aren’t hidden away but sit proudly on the coffee table. 

Participant

Journeying Through Dementia

An evidence-based group programme created by occupational therapists and people with dementia for individuals at an early stage of their dementia journey.

Partners: Alzheimer Scotland
Team: Claire Craig & Helen Fisher

Journeying through Dementia is an occupation-based intervention that aims to support people at an early stage of their dementia journey to engage in meaningful activities and maintain community connectedness.

The programme was developed in partnership with people with dementia who spoke of the value they attached to continued participation in everyday occupations and in new learning. Throughout all the co-creation activities, people with dementia were clear that wanted to have the opportunity to access groups that did not just talk about the diagnosis but that offered practical advice and support of how to continue to live well with the condition.

This intervention directly supports delivery of ambition 1 of Connecting People, Connecting Support (Alzheimer Scotland 2017) of enhanced access to enable people to be supported to look after their own health and wellbeing.

Emphasis throughout is placed on ‘doing’ rather than simply talking about strategies and challenges. Individuals are given the opportunity to put ideas into practice either within the group or through organizedout of venue activities. This helps to build confidenceand also encourages active problem solving. The community is seen as a place where skills are enacted and the place where individuals can access a wide range of resources to support roles, maintain and develop relationships and to experience enjoyable leisure activities, which support well-being.

Pilots have been carried out in Scotland with Alzheimer Scotland, Fife Health & Social Care Partnership and NHS Grampian, and the South Carmarthenshire Older Adult Mental Health Team, based in Prince Philip Hospital, Llanelli, Wales. The following video features our Llanelli Journeying Through Dementia Group.

Background

Journeying through Dementia was inspired by a growing number of people living with dementia who were meeting together in their communities to offer each other support. This approach was best exemplified by the work of the Scottish Dementia Working group.

Gail Mountain and Claire Craig (2004) had successfully undertaken research to develop and facilitate an occupation based group aimed at community living older people called Lifestyle Matters which had enabled individuals to connect with valued occupations in later life and to adapt and enact meaningful occupations in the community and this raised the question whether a similar model (peer sharing, group work and didactic teaching) could be used with people with dementia.

Claire Craig then worked nationally with people living with the condition to build understanding of what people with a recent diagnosis of dementia identified as being helpful or resources and support they felt would have increased their quality of life. The results are reported in a paper: What should be in a self-management programme for people with early dementia? (Ageing and Mental Health, 2012)

This research then formed the basis from which Claire Craig developed the initial Journeying through Dementia Intervention. For the next ten years small pieces of funding supported the refinement of the programme and a total of six groups were facilitated, each time people with dementia gave feedback and helped Claire and Helen shape the final iteration of the programme and kit of resources that you see before you now.

With special thanks to Design Futures Packaging for bringing the resources to life.

When I go home from here, I feel better and do more.
The more you do, the more you can do.

Journeying through Dementia participant

I feel we’re helping one another, being on the same wavelength.
I have new friends I don’t think I will ever forget.

Journeying through Dementia participant

The 100-Year Life project

The 100 Year Life Project will exploit and advance the role of design research in enabling older people to lead longer, more productive lives – the longevity effect. Lab4Living has been awarded funding by Research England through their Expanding Excellence in England (E3) fund to support the strategic expansion of research in this area.

Funded by: Research England


Due to higher life expectancies the number of people expected to live to be 100 will increase significantly by 2066. The changing demographics and structure of the population will bring many challenges to society, the economy and services. However this will bring new opportunities for the emergence of new markets, increased involvement in volunteering, longer working lives and possibly providing care for family members. Individuals will need to plan their life and retirement differently with existing ideas of ageing being replaced with models of a multi-stage 100 year life (birth, education, work, education, training, work, career break, education and training).

Age related products, new housing models and care technologies which enable older people to lead more independent fulfilled lives will be considered within this project answering questions on what these products are, how multi-sectorial groups of people will work together, what standards and quality assurances are required for these products and services  and how this knowledge is shared across sectors.

“One in three children born in the UK today can expect to live to be 100 – and by 2066 one in two children will reach this milestone. We need to look at what this expanded life-span will mean for where and how people live; what products will they use; what the implications are for health care, communities, and, of course, the home.”

Prof Paul Chamberlain

Focusing on informing the scale and scope of the Future Home, the project will generate ideas for new aspirational products, protocols and interventions which meet the physical, cognitive and emotional needs of an ageing population within the Future Home.

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For more information, please contact Julie Roe, Project Manager E3, Lab4Living.